Cold Caps Users Past and Present, to Save Hair
Comments
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Brca-I'm no expert, as I'm still in treatment. I do know that a lot of the women who have had success would say not to cut it as it can throw your hair into shock and you might loose what you have. Definitely keep using the caps, they promote growth, and they will prevent any permanent loss. I am in between treatment 2-3 and I noticed new growth on my bald spot. I lost a lot due to having too much hair! between tangles and the weight of it, plus the cold not being able to penetrate the hair I had an uphill battle. I've been able to wear scarfs over the bald spot with a my hair showing on the bottom. No one even knows, I have a bunch of old silk scarfs that I use, they are soft and fashionable.
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Ladies experiencing bald spots: Are you all using the same chemo protocol? You should be in touch with Frank and the Penqin Cold Caps Group, they should have better answers for you. Keep using caps to prevent permanent loss and to promote quicker regrowth.
Try to Keep Positive!
Nancy
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Brca - I am also not an expert, but I am on AC and I can understand what you are going thru. AC is the killer. Taxol is much easier on the hair but without Cold Caps it will fall out. I remember you said that you had problems with the PCC during your first AC infusion. What about during the 2nd and 3rd? Too cold not cold enough? What shampoo are your using? I have been thinking that if I lose my hair from the crown I will use wide head bands with a hair extension but never cut my hair because I look terrible with wigs and keep using the PCC. I suggest calling Frank, so he can tell you how to protect your bold spot.
Today is Day 22 after my first AC infusion, I will have my third AC next Tuesday. I am shedding a little bit more than normal, but not that much. I don't have any bold spots and I lost 15 strands from the crown for the first time without touching it (my hair is also thick and I am not using the yellow strap because it kills me, so maybe, as Dexxy said, my hair is not getting cold enough on the top).
I think we made a lot of mistakes during the first infusions, so far this is "my PCC protocol": The premeds for my AC take only 30 minutes so I put the first cap 20 min before they begin the pre-meds infusion and right after I put the second cap they start the pre-meds. It takes about 14 minutes to add the pre-meds to the saline, so by the time they finish with the injections I am ready to put on the third cap. 10 minutes later I get the Adriamycin (2 huge syringes are pushed it into my IV. It looks blood red in color....only takes about 5 minutes). Next come the Cytoxan, clear in color....this is hung to drip for 30 minutes, so by the time that I have to put the 4rd cap the nurse is gone. 7 caps later we are ready to go home and keep changing them every 30 minutes for 5 more hours.
The only terrible thing is that I can't even think about the caps now without feeling pain or nausea. Since I got sick the first time wearing them, I associated them now with that experience. I am working to move on because it is not fun. I definitely can't wear them between infusions (I don't remember if you did). However, I will not quit!!!!
Good luck!
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Ralston, Dexxy,
I am day 40 now and will have #4 of AC in a few days. I had most of my shedding around days 20-25. I have been able to wear wide headbands, scarves tied as wide headbands and now bandanas etc. today I got a wig (*very warm* to wear).
treatment #1 - may have gotten some frostbite at the top - some oozing, crusting and flaking after.
#2 and #3 - I think the temp was right, we use them on the cold side of the temp range, during #3 I covered bald areas with a silk hankerchief as recommended. What's interesting is my hairline and nape where people don't get as good cap coverage are fine though just starting to thin, the lower back of my head is virtually normal, it's the top where the cap is coldest that's bald, so I don't think it's the temp - it's the adriamycin, me and whatever.
shampoo - Lavera diluted by 1/2. cold water.
I started silica a few weeks before PCC. Only was using aluminum free antipers for 6 weeks prior and that might not have been ideal.
I henna my hair normally and had done this 4 weeks before PCCs- may have had an impact on how my hair is doing now.
My hair is not very long - a chin length bob and straight and on the thin side to begin with, this may have been a factor. I get the impression that longer hair gets better results.
I also have not been able to wear the caps in between infusions. I feel queasy looking at them.
good luck right back at you!
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Brca - I am really sorry! I know how hard you and your husband have worked to do it right. I read today that we have to keep oil and conditioner off of our scalp, because anything on our follicles or hair bulbs can cause chemo to bond to it. I also checked the PCC protocol again and they repeat twice to shampoo the hair for as short a time as possible and rinse the hair thoroughly. Again we want nothing binding to our follicles. Some people rinse their hair with cold water everyday and it seems it has helped them. Cold is the key. I think the oil that you applied after your first infusion bond really hard to your follicles. I am really sorry. I am still waiting to hear from someone that has been successful during and after ACT. Please let me know how the wig works for you!
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Brca: don't quit now, or you will lose the rest of your hair. Everyone who starts taxanes lose their hair by day 12-14. They are incredibky hard on your hair, my new MO mentioned this to me when he saw me last week. He was surprised I had so much hair using caps and I do not have a lot of hair left.
Like you, I have thin shoulder length. I just finished TC x 4 2 weeks ago. My hair has thinned significantly on the top and sides, the back looks almost normal when compared to the top, but it is thin as well.
During treatment I had to place gauze on my thin/bald spots on the top of my head. My part has been widening and lengthening during treatment and I have a bald spot at the back/crown.
I firmly believe that the effects of chemo cumulatively damage the follicles as I am experiencing far more shedding after treatment #4 than I did during after the first 3. I would shed everyday day, more than normal, then experience a big shed days 18-24. I would also experience a big shed with each wash. My hair after #4 now seems to be experiencing what I call big sheds every day since last treatment.
I patiently wait for the shed to stop and have no clue when that will be. I have been extremely careful in the way I treat my hair, take silica and biotin, only wash once per week using organic shampoo. Yes it is discouraging, but if I have prevented permanent loss, then that is a win. I just hope that my hair will start it's recovery and regrowth phase relatively quickly as the follicles were protected.
I do wear a wig or hat in public as my hair is far too thin and straggly for me to feel comfortable. All in all, I would say I have lost at least 30% thus far, but I started with thin hair, hence the bald spots on top.
Please do not think you have done anything wrong, chemo is hard on the hair, plain and simple.0 -
Have you found an aluminum free antiperspirant that works? I am having trouble finding one.
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thanks for all the support and encouragement. I plan to continue for now... #4 AC on Friday!
I agree that preventing permanent loss is important and continuing caps may get me back to growth quicker.
I agree that oil on my scalp may have been a factor- I did that after #2 and while it soothed my scalp and felt great and I didn't have the flaking/crusting that time, I had a lot of loss and it may be related.
aluminum free deoderant: bumble and bee and jason's work best for me. toms of maine is ok.
the crystal works, but apparently converts to aluminum on your skin so I'd avoid it at least during chemo and caps.
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Hi Ladies: Well, week #11 post chemo and the shedding continues. I was going to chop the hair off but friends convinced me otherwise. I don't have any bald spots since the hair is coming back quickly though. The cradle cap mess is very annoying.
Only 12 rads left and just minor rash thus far. The radiologist told me to use hydrocortisone cream for the itching and that works well. The aloe and vitamin E, as well as the Aquafore work really well.
Hang in there ladies. I know there is a light at the end of the tunnel.
Arlene
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Leeann56 I just sent u a pm!
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Nice to hear from you Arlene! Just how much post shedding are you having? I am 2 weeks PFC and the shedding is far worse than after tx 1, 2, & 3. It must be cumulative damage to the follicles. Just looking for some relief in sight. Encouraging to hear your hair is growing quickly. When did you first notice it?
I hear you about cradle cap/flakes/build up. My scalp needs a good scrub/exfoliation. It is itchy and if I itch, hair falls out in clumps. Hopefully I can start to wash a little more frequently to get rid of cradle cap! Thank for checking in!
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Hi ladies
Gosh this board is hopping. Congratulations to all of you who have finished! Big milestone. A huge hug for all of you still in treatment. Hang in there.. This too shall pass and your hair will grow.
I am 6 months PFC. I had my first real shampoo with warm water. Ohhh I was scared. But it was yummy and all the hair stayed attached to my head whew. I then used a hair dryer w diffuser on cool for the first time since all this started. I almost felt normal. When I picked up the mascara wand for the first time.. Wonderful. Choice is wonderful.
Braids as a style statement are underrated. I have graduated to a one sided braid. I think I
will put getting a hair cut on the back burner and just enjoy my hard won 4 inches of new growth...
I have approx 50 percent of my hair left. It was thick and wavy to begin with. So It works, although thinner. I am self conscious but I am reassured by others that it looks fine.
After meeting with Ralston I think I would have done better had I had the opportunity to use the long gel strap she had to wrap around the bottom of the cold caps. I went bald over ears and nape of neck. That strap I think would have protected that hair. I do now have new hair growth giving me full coverage over ears and nape of neck.
Hang in there ladies. You too will soon be at the PFC 6 month mark enjoying your first warm shampoo.0 -
Hi Ladies just checking in, I'm sporting the braid look and even though my loss has been significant I still have some hair, and no one would know i was doing chemo. I'm having to wear scarfs to cover the bald areas but so be it. I'll be curious to see what happens in the next week. I am day 14, round 3 of TC in a week. The last 5 days I have had very little shedding. here's hoping it continues. I do still have eyebrows and eyelashes. Also I still have hair on my legs and arms. strange what stays and what goes. I also have lots of "stubble" on my head, new growth is coming in, but its funny how is so light in color. Feeling tired quicker in the day, and some muscle pain that feels like a ran a marathon, otherwise all is well.
Its great to hear from all of you who have finished and are SURVIVORS of CHEMO! I love to hear about warm showers, and real shampoos, its hair porn!
hugs to you all still in the throws of hair preservation
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Well, I might confess that Sashette is my biggest inspiration. She and her husband did something really really right and they didn't even have time to practice because she received the caps almost the day before her first infusion. Well, in the process they perfection the "cool caps" protocol and even their "little bumps" in the process didn't cause damage. Seriously, I saw her almost 2 months ago and she has not only the most beautiful thick and full eyebrows, but her hair really, really, really looks amazing: It's long, curly, shine and soft (at least it looks like!) For me she and her husband are the proved that harmony, loved, team work and compromise gives the best results. Again, they did something really right, because although the Tax's create damage in the long run she was able to control her shedding PFC during 3 months. I am so happy that you enjoy so much your first real "warm shower", you deserve that and more. Congratulations!
Dexxy: It's just Day 24 for me but I am also surprise about all the hair in my legs. I think the famous "big shed" is coming but not bald spots or clumps yet. I have lost ¼ of a snack bag. I am shedding evenly so far. Nevertheless, I remember you said that you have to cover your hair because you lost your crown. How did that happen? If I pass my finger thru my front layer (I don't pull) I lose at least 5 strands. My husband said don't touch it! Question: if I don't touch it I will just keep for a little longer the ones that are barely attach or everything I manage to keep after 30 days will stay? Have someone had regret combing your hair to get rid of loose hair because you loss more in the process?
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Ralston-the less you touch the better in my opinion, even combing depending on your hair type, can pull even the slightest and you will loose more. Remember your hair is trying to hold on! You are rockin girl, 1/4 sandwich bag is awesome, your big shed should have happened by now, most say 16-24. So I'll keep my fingers crossed for you! I on the other hand just had too much hair. super thick and curly, and long. Caps just could chill through all of it. so when it started to shed, it tangled around good hair and caused dreads. Which you can imagine even after 2 hours of gentle negotiation left me with a lot of hair in my lap. I won't even tell you how many bags.....but hey I still have some and its holding for now, we shall see only time can tell. Keep up the good wrk
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Thank you Dexxy! Well, this process is like "live TV", we can't really afford mistakes. My hair is also super thick, curly and long (bra-strap), but thanks to Sashette's advise I have braided my hair since the first AC infusion. I really believed it has made the difference because I have not had to deal with any tangles or dreads. When I gently braided my hair everyday, I barely lost hair, but since I started touching my front layers and I decided to combed out is when I lost 1/4 snack bag. Anyway, I knew it, I did it, and I learned the lesson.
The good news is that nobody (incluiding me) can tell that I lost hair. 0 -
Wow Ralston, you are doing great! Way to go!
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Thank you! I don't know how to tell the newbies the importance of "do not pull your hair". I did lose more hair than ever today (Day 24), but I strongly feel that was because of my own error. I feel like an idiot because I knew it and I kept running my fingers thru my front short layers and 10 strands would come out every time. Anyway, lets not forget that I still have 2 more AC infusions followed by12 weekly Taxol, the low dose, which seems to have less severe side effects and hair can start growing again during weeky low dose Taxol. My journey is long, but I am embracing my treatment for what it is -a healing agent that is aiding in my wellness.
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No Newbies, as of late. Maybe less women are being DS? I can only hope less women will sit in the chair one day
Correct me if I'm wrong, less hair loss on AC than TC right? can't remember. Ralston-are you doing just Taxol after AC? or are you doing Cytoxan as well?
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Dexxy - The combination of Adriamycin and Cytoxan (AC), known as the "red evil", is the main hair killer. Taxol affects the hair much harder than AC in the long run. The Tax's affect our digestive system, in turn it cannot make the silica our body naturally does to nourish the hair bulbs. All the new baby bulbs die off.(that is the main reason why we lose more hair PFC). However, it seems that women who received 12 weekly treatments with Taxol have less severe side effects from the chemotherapy. This is probably because each Taxol dose is slightly less than half the standard dose. After Taxol I am done.
Some of the newbies have been contacting me thru PM. As important as it is to share experiences sometimes we just can't fit the forums into everything else we have to handle, but I keep posting my experience because I know that they are our "silent companions". I was one of them for four months. I followed the threads but I did not participate.
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So the most emabrassing and funny thing just happened LOL... I am laughing just typing this now haahaha.. So I wear this head band hair piece when i come to work just to add volume to my hair (weekends i usually just let my hair flow and wrap a half scarf etc) anyway, so i gave my netbook to our IT intern in the morning to add word, internet explorer etc, so i am seating at my desk and he comes over to bring my netbook and as i turned my chair around my head band piece fell off HAARA HAAHAA i quickly grabbed it and looked stragiht at his face as he was giving me feedback about my netbook, LOL... thank God my head is full of my hair, i dont think he noticed coz he didnt flinch LOL... anyway just thoguht it was hilarious!!! Hope you all are having a good friday!
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Hi everyone - I am a newbie here. Posted once for advice last week, and have exchanged a few private messages with Ralston (so helpful - thanks again!).I figured I would start posting here more once I got underway, but I saw dexxys post so I wanted to de-lurk and say hi. I was diagnosed in late June, BMX on July 12th. Starting chemo (and cold caps) on august 16. I'll be doing AC x 4 followed by taxol x 12. I haven't seen too many reports of people being successful with cold caps with my regimen, so I'm really heartened to see a few on this board for inspiration! I am 39 and have 3 young kids (7, 5, and 2.5). My oldest is freaked out about me maybe losing my hair, so it would be great if this works! One question for you all- I know frank recommends leaving the caps in their boxes when in dry ice, but I had a former user telling me it was better to put them in ziplocks and lay them flat because they cool much more evenly that way. Any thoughts?
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Actually, one more question. Has anyone found a non-aluminum deodorant that actually works? I've tried Toms so far, but it's not working too well for me so far.
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Welcome isstreet! I use bumble and bee deodorant and natures gate. My sister swears by thai crystal. I have not tried it yet myself.
I just wanted to encourage any newbies....I finished TC x4 on May 3rd. I just am traveling home from a beach vacation to celebrate being healthy and done with treatment/surgery. I will post a picture when I can. Though my hair is thinner no one would know. I still have a full head of hair. We had professional photos taken while there and the photographer said "so you were able to keep your hair?". She could not believe it when I told her...neither can anyone else when I tell them. I am still shedding but it seems less this past week. Hang tight ladies...you can do this!0 -
lstreet - I have 2 kids. 11 and 2. I kept my hair all thru AC. It really started to drop after my second treatment of taxol. Only in the last 2 weeks has it been so thin that i've had to constantly keep a hat or scarf around it. THankfully, i can manipulate a few strands to dangle at my ears and in the back so that i don't look bald. While i'm a bit disappointed that i haven't been as successful as others (i'm still shedding and i finished 10 days ago), i'm thrilled that i have never been bald around my kids. ALso - the chemo itself was totally manageable. I was up every morning, active all day. It never interfered with my life as a mom. Other than the war the steroids cause to your brain ... it'll all be ok! Hope that helps you. I know I was scared about how I'd care for my kids. It's just medicine.
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Hi all~
I just ordered "Crystal Essence" deodorant from Amazon.
My sister swears by it and it is working for me although it has only been a couple of days...
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LivCar – Your postings have always provided great encouragement. I learned a lot from your experience which has also helped me to keep a real perspective during my “I’m getting bald panic moments”. The fact that you said: “I kept my hair all thru AC” or “it look great all thru AC” always has given me hope, because when I read your postings from 4 months ago after Day 21 you were really concerned after filling the sink with hair and it continually fall everywhere during AC that you were going to lose all you hair.
I don’t remember how thick and long is your hair, but I remember thinking, well she lost a lot of hair and at the end, she still has full coverage. That sounds great!!! Your posting also taught me that if I over comb my hair, touched or pulled it I will lose more (believe me, you told me, I did it, and I paid the price). Also you didn’t make me feel alone when I read your post after finished your third AC “the cold and the heavy cap make me nauseous and tired, by the end of the day I feel tortured” and nevertheless you wore the caps 5 more times.
Finally, my biggest “aha” moment was the night that you decide to craft your own hair piece, happy knowing that your children went to sleep happy and without worries because they have never seen you bald. That is priceless!!!!
By the way how your hair extension glued to a head band worked?0 -
Thanks mdg and livcar for the encouragement! I really admire the strength and bravery of all the women on the board. I bought one inexpensive wig and one scarf just in case, but am really hoping to hold on to my hair as long as possible. Feeling hopeful base on your experiences! Thanks also for the deodorant suggestions - I'll check all of those out.
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Thanks Ralston! i needed that. I've been trying to log on less ... i'm trying to get a little of the bc out of my life, but I keep thinking of all the new girls that need encouragement - just like i did. Oddly, i still do.
I started out with a lot of hair. Not thick hair, but lots of it. I really did fill the sink during the BIG shed. While i still had a lot of hair after that, i always worried "how much hair do i have? how long can i keep shedding like this and still look normal". The uncertainty was always the problem. So - as you've read ... I had great coverage all thru AC. It wasn't til the taxol hit that things changed - and they changed fast. I was dose dense for both treatments. Not sure if that was the problem- but the taxol was a game changer. i still have hair - but it's one layer, grey and very unattractive. Now - i wonder when the new growth will start. In that respect, i feel as vulnerable and scared as the new ladies starting to shed.
As for my rigged hair band. It turned out great. It was the perfect solution. UNFORTUNATELY - i started to itch 10 minutes after it was on me. Maybe a reaction to the glue??? Couldn't catch a break!
You'll be just fine with AC and the caps. When i stopped taking ativan and took tylenol instead on cap days - i felt less nauseous. That said - my stomach still turns when i think of them!
Thanks for making my day.
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Isstreett I also have a young child. My son just turned 5. He does not even know what chemo is or anything about losing hair. Chemo was manageable.for me. I was up at 630am M-F to get my son off to preschool. I exercised at least 1 hour a day on M-F too all through chemo. I did not miss one workout other than infusion days. I had chemo on Wednesdays so the weekend after we just didnt make plans to do much. The rest of the time we did normal things and had lots of plans. Good luck!
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